Sarcoidosis
Synonyms: Besnier-Boeck-Schaumann disease | Boeck sarcoid
A rare multisystemic autoinflammatory disorder of unknown etiology characterized by the formation of immune non-caseating granulomas in any organ(s) leading to variable clinical symptoms and severity. Clinical presentation is typically with persistent dry cough eye or skin manifestations peripheral lymph nodes fatigue weight loss fever or night sweats and Löfgren syndrome.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Reference: Access aggregated data from Orphanet at Orphadata.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version April 2024
Newly diagnosed with
Sarcoidosis?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Advocacy Organizations
Autoimmune Registry Inc.
Autoimmune Registry, Inc., ARI, is a 501(c)(3) non-profit umbrella organization that provides a hub for research, statistics, and patient data on all autoimmune diseases. Since 2016 we have operated a database for patients who suffer from any autoimmune disease. Our mission is to reduce the time of diagnosis, support research, compute prevalence statistics, and establish autoimmune disease as a major class of disease so that it receives the awareness of the public, the attention of healthcare providers, and the appropriate funding needed to improve upon existing treatment protocols and disease management strategies.
Autoinflammatory Alliance
https://autoinflammatory.org
Breathe Support Network
MISSION STATEMENT The Breathe Support Networks mission is to provide support and education for pulmonary fibrosis patients and their families, helping them to better #LIVEwithPF. This includes, but is not limited to: - education about pulmonary fibrosis - guiding patients and families on how to talk to their healthcare team - providing tips to live a healthier more productive life - providing information about other pulmonary fibrosis resources
COMBINEDBrain Inc
COMBINEDBrain is a consortium for outcome measures and biomarkers for neurodevelopmental disorders. We are collaborating to cure rare, non-verbal brain disorders.
Caring Hands Sarcoidosis Foundation
Our Mission is to provide patient advocacy, educational materials and self-empowerment for people living with Sarcoidosis.
Children’s Cardiomyopathy Foundation
CCF's mission is to accelerate the search for causes and cures for pediatric cardiomyopathy through increased research, education, awareness, advocacy, and support to affected children and their families.
FMF & AID Global Association
We support the global RARE autoinflammatory community, both children and adults, by providing information, guidance, advocacy, raising awareness, and support through targeted projects including financial assistance, educational tools, research, individualized support and collaborate with relevant stakeholders globally.
Foundation for Sarcoidosis Research
Foundation for Sarcoidosis Research (FSR) is the leading international organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients through research, education, and support. Since its establishment in 2000, FSR has fostered over $6 million in sarcoidosis-specific research efforts.
Genetic Epilepsy Team Australia
Collaboration of research and care
Heart of a Giant Foundation
The mission of the HGF is to achieve better health outcomes for heart diseases and related chronic health conditions in our communities and enhance the quality of life through health education, care support, and connection to community resources.
Help Hope Live
Help Hope Live assists individuals living with catastrophic injuries and illnesses to fundraise toward their medical expenses and related costs.
International Foundation for Autoimmune & Autoinflammatory Arthritis
We are leaders in advancing education, advocacy, and research for those impacted by autoimmune and autoinflammatory arthritis (AiArthritis) diseases through peer-led guidance, collaboration, and resources that are driven by patient-identified issues and patient-infused solutions.
Moonshots for Unicorns
Curing single-gene disorders
My Faulty Gene
My Faulty Gene is a nonprofit organization which provides information and assistance to any individual whose family medical history suggests genetic testing might be helpful in identifying an increased risk of disease due to a genetic mutation. We believe that everyone in need of genetic testing should have access to it.
Project CASK
To fund research for treatment and/or a cure for CASK Gene Disorder
Stronger Than Sarcoidosis
Our mission is to raise awareness, advocate, and educate about this rare disease called sarcoidosis. We aim to strengthen the sarcoidosis community with information, support, connection, and interactive events that focus on the physical, mental, and emotional aspects of living with this disease.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
Ukrainian Association of Pediatric Immunology
Development of pediatric and clinical immunology in Ukraine. Raising awareness of inborn errors of immunity in Ukraine and rare immune diseases; Advocacy campaigns supporting patients with rare immune diseases and their treatment plans; Scientific research; Sharing knowledge about immunoprophylaxis; Advocacy campaigns supporting immunoprophylaxis.
Clinical Trials
For a list of clinical trials in this disease area, please click here.